DrBill's Long Overdue, Kansas City, IV-Blues-News

November 7th, 2008 at 11:44am DrBill 180

Today marks the 70th, er . . . make that the 124th day since beginning treatment here in Kansas City for chronic Lyme Disease. This twice-daily IV antibiotic therapy is not for wimps, rather, even the most positive, strong and relatively healthy of us here find this nothing short of grueling. The microscopic improvements experienced along the way are cause for celebration and a focus must be kept on these small, "wins", to stave off discouragement, depression and negative thinking. Some of us are more successful at this than others. Fortunately I count myself in the former group. My wins include stepping into my boxers without having to sit down, buttoning shirt buttons, slipping on shoes, being able to differentiate between what is in my pockets, clearer thinking and beginning to sweat again after 15-years of dangerous anhydrosis, i.e., not sweating . . . at all. These seem like simple tasks, but are actually complex neurological feats so easily taken for granted by most. Healing is hard work. You probably have some reality on how exhausting, doing nothing can be. Seven hours a day in an uncomfortable and "too short", reclining chair, tethered to an IV-pole, pretty much paints a picture of every day's scenerio.

I fall back on a prior post's disclaimer that, "There is little time but for sleep, food and IVs, thus the extensive delay in this Blog update." Intermittent, no, make that rare internet access at my apartment has hindered attempts here too. If you ever find yourself in Kansas City's south 'burbs, go AT&T, not Time Warner, otherwise known as, "Time-Wasted" or, "Time-Waiting." I have actually had a draft in the works here for several months. I've included some very informative links here that tell my and other's stories well.

Check out:
www.butyoudontlooksick.com The "Spoon Theory" for a sense of daily life with a chronic illness.
www.underourskin.com about the very revealing documentary, "Under Our Skin." "A dramatic tale of microbes, medicine and money, this eye-opening film investigates the untold story of Lyme disease, an emerging epidemic larger than AIDS. Each year thousands go undiagnosed or misdiagnosed, told that their symptoms are "all in their head" or otherwise mislabeled, following the stories of patients and physicians as they battle for their lives and livelihoods, the film brings into focus a haunting picture of our health care system and its ability or rather, inability to cope with a silent terror under our skin."
Follow this link for a 13-minute excerpt from this provocative film: http://snagfilms.com/films/title/under_our_skin/
Wikipedia - "Lyme disease, or Borreliosis, is an emerging infectious disease caused by at least three species of bacteria belonging to the genus borrelia.[1] Borrelia burgdorferi is the predominant cause of Lyme disease in the United States, whereas borrelia afzelii and borrelia garinii are implicated in most European cases.
Lyme disease is the most common tick-borne disease in the Northern Hemisphere. Borrelia is transmitted to humans by the bite of infected hard ticks belonging to several species of the genus Ixodes.[2] Early manifestations of infection may include fever, headache, fatigue, depression, and a characteristic skin rash called erythema migrans. Left untreated, late manifestations involving the joints, heart, and nervous system can occur. In a majority of cases, symptoms can be eliminated with antibiotics, especially if diagnosis and treatment occur early in the course of illness. Late, delayed, or inadequate treatment can lead to late manifestations of Lyme disease which can be disabling and difficult to treat."

PICC-Line Paronaia - I refer to my late June blog post prior to my arrival here in KC. The initial chapter was just the beginning. One August morning I awakened to a horrifying image in my bathroom mirror, that of a blood-soaked arm dressing, the result of vulnerability to a new and questionably trained nurse. The nurse had removed my port or PICC-line access cap, wrapped me and sent me on my way for the night. I evidently didn't start bleeding through my PICC-line until I had reclined in bed. If my line hadn't clotted, I would have "bled-out." Post Traumatic Stress from this life threatening event delayed my ability to talk or even write about this.

Vancomania - a term coined by fellow patients to describe treatment with the potent antibiotic, Vancomycin and its side effects of Lumbar back pain, increased urinary frequency, paranoia, irritability and disorientation. I've experienced all of the above as have the other patients who have been treated with Vancomycin. Our so-called, "Lyme Club", is part of a survival mechanism and support team here.

Progress and encouragement - peole going home well or at least on their way to being well, transitioning from IV to oral medications. It seems there is a celebration every other week for a patient of varying duration, ready to re-emerge, as a member of those living life, not just hoping and praying for another chance at a healthy life. Other former patients stop by and offer stories of healing and new life. It does help. Just this past Friday I began a new round of treatment with a different antibiotic and am again in the Herx* and recovery, Herx and recovery cycle. Borellia is a Spirochete bacteria. Herxes are especially associated with successful antibiotic treatment of Spirochetes.

* Wikipedia - "The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. "
The reaction is characteristically experienced as an exaggeration of a patient's primary symptoms. It's sad but it seems that the more effective the antibiotic, the worse the Herx. When a patient comes into the clinic and announces that they are Herxing, the team often responds enthusiastically, "but, you're killing bugs!"

. . . time to wrap this up and get some sleep before afternoon/evening session. The projected good news is that if I continue to respond in text-book-like fashion, I may be leaving here by Christmas! The 2008/2009 snowboarding season has already been written-off in my mind so I may head to the beach to rebuild red blood cells and muscle before returning home. You'll be among the first to know.

Happy Thanksgiving to you all and please include your respective good health in your thanks.

In Gratitude,
DrBill

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